Saturday, March 19, 2005

just curious....

We are still waiting on the genetic testing results. Here's a little info to fill you in.. And a question I'd like to ask...

Ovarian and breast cancer can be caused by a genetic mutation that is passed on in families. Two mutations have been identified. BRCA1 and BRCA2. If you have these mutations, it's not guaranteed you will get cancer but the odds increase dramatically. When several women in a family have breast cancer or more than one has ovarian cancer the red flags go up and genetics are suspected. (Two women in my family have had ovarian cancer and three have had breast cancer)

I have a question for all of you. My mother was tested. She already has OVCA so the information will not help her. Identifying a gene mutation may help the other women in our family. The lab will know what to look for -so to speak. Mom was tested for us.

If you were me,and if you had a choice, what would you want those results to be?

I'll tell you how I feel and what my thoughts are after I hear from you.........


Anonymous Louise said...

It's really hard to say, especially since I am someone who has already had ovarian cancer. It is pretty likely it is genetic for me. I am young, there is at least one other case of ovarian cancer, and several cases of breast cancer in my family. I may be BRCA1+ (it is unlikely that it would be BRCA2). Or it could be that it is some other gene mutation which hasn't been identified.

I've gone through genetic counselling with my mom and my sisters. I've decided for the timebeing not to have the testing done. If I test positive, it won't tell me anything I don't know. I live my life as though I do have the gene mutation and so am diligent about breast exams. My older sister wanted to be tested, my younger sister saw things as I did -- might as well live your life as though you could have the mutation. My sisters go in for gyn exams ever 6 months, as does my mother.

This doesn't mean that I will never be tested. If a research trial comes up that is interested in me and my family, I would take part. If more gene mutations are linked to ovca, I will probably be tested. If it could help someone in some way, I will be tested. For now though, I don't want to deal with that anymore than I already am. Being tested won't do anything for me -- if I find out I am positive, I will be depressed. If I find out I am negative, I will also be depressed. So I will remain ignorant, yet diligent in monitoring my health, and keep relatively happy.

8:59 PM, March 20, 2005  
Anonymous Rae said...

This is one of the most difficult questions to answer. If the results are negative, you still have the family history so should get regular screenings anyway. If it is positive, that is quite a weight on your shoulders. My cancer is most likely not genetic, so I can only speculate. If it were me, I would determine beforehand what (and when) action I would take in both scenarios, positive or negative. If the results are positive, do you want to have preventative surgery?

Really, this is such a personal issue, and since I haven't had to deal with it, I can't imagine how I would react. I think the safest bet is to continue with thorough and frequent visits to your ob/gyn no matter what. If the results are positive, be sure to inform your gyn and makes sure she is extra diligent with ovca screening.

Wishing the best for your family.

10:27 AM, March 21, 2005  
Blogger Laurie said...

Wow. What a question. I couldn't begin to say which I would prefer. I hope you all have a nice Easter.

6:39 PM, March 24, 2005  
Anonymous Anonymous said...

As someone who lives in fear of the family curse of breast cancer, I would be tested in a heartbeat. If positive I would truthfully consider a double masectomy and have all my 'female' organs removed. Then, in addition to living a healthy life, I would at least feel some comfort in knowing I have done all I can to prevent the cancers.

10:24 PM, March 30, 2005  
Anonymous Terri said...

I would have to be tested....just for ME. I've always felt one deals with things better if we know the best and worst. Then we go forward, in the best way possible.

9:03 AM, September 01, 2006  

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(written September of 2005) I have learned much in the last nine months. I have read that ovarian cancer whispers. I say it screams. It just needs someone to listen. The American Cancer Society statistics for ovarian cancer estimate that there will be 22,220 new cases and 16,210 deaths in 2005. This is a death rate FOUR TIMES that of breast cancer.Almost 70 percent of women with the common epithelial ovarian cancer are not diagnosed until the disease is advanced in stage. The 5-year survival rate for these women is only 15 to 20 percent. This is unacceptable. Women need to be made more aware of the symptoms, and doctors need to listen to their patients. Especially when the patient tells them that they fear they have ovca, as my mother did for almost a year before she was finally diagnosed. It’s so sad and senseless when a woman knows the symptoms but can’t get anyone to listen to what she is saying.